Autism bill passes, thanks in part to a single voice

When other kids stayed home from school during a snow day last month, Robert Maino headed with his mother to the halls of the General Assembly.

The debate around the autism bill fascinated him, so his mother encouraged him to write a letter thanking the bill's supporters.

He took it a step further, writing to both those who supported and those who voted against the bill requiring insurance companies to cover a form of autism treatment. Maino, an 18-year-old from Mechanicsville and an upcoming Christopher Newport University freshman, has Asperger's syndrome, a mild form of autism.

His letter captured the attention of legislators, who invited him to speak.

His story about his struggles and how early intervention paid off helped put a face on the bill, which supporters spent four years trying to get passed.

Four years ago, a coalition of families across Virginia called the Virginia Autism Project set out to lobby for better treatment of children with autism. This year, the General Assembly listened.

Legislators passed a bill requiring health insurers to cover the diagnosis of autism spectrum disorder and treatment using applied behavior analysis for children ages 2 to 6, subject to an annual maximum benefit of $35,000. It exempts individual or small group policies. It awaits the governor's signature to make it law.

"It's amazing," said Mark Llobell, a Virginia Beach resident and a founding member of the Virginia Autism Project. "Any step that you can take to help a child live a successful life is a huge step."

Llobell's grandson was diagnosed with autism and was completely nonverbal by the age of 2. His doctor prescribed applied behavior analysis, but insurance wouldn't cover it. The family paid upwards of $50,000 out of pocket for it. Now he's talking and attending public school.

"We were fortunate enough to have some savings to be able to do that," Llobell said. "We want to make sure that every child and every family that has a child with autism has that same opportunity. It's really our goal to touch as many of these children early (as possible) and get them back into the mainstream of society."

Autism spectrum disorders are a group of developmental disabilities that range from mild to severe. Symptoms vary and can include impaired social interaction and repetitive movements.

Applied behavior analysis is an intensive treatment that retrains the child's brain to think, act and communicate with others. A board-certified behavioral analyst works with a child one on one, finds out what motivates and interests the child and rewards him or her for participation. The analyst constantly must regain the child's interest and focus.

"It's very expensive and very extensive treatment to get into the inner working of that child's brain to find out what makes them tick," Llobell said.

But it'll save money in the long run. According to a 2009 Joint Legislative Audit and Review Commission study, education savings of $187,000 or more per child can be achieved with early intensive treatment.

A Harvard study found that it costs on average $3.2 million to care for someone with autism throughout his or her lifetime. Those costs would be reduced if intervention happens early and the child is able to become a productive member of society, Llobell said.

Insurance companies denied covering the treatment because it doesn't "cure" autism, Llobell said. But it does create a meaningful difference in the way a child communicates.

"Without that intervention, the child will live in a world of their own. They'll watch a fan spin around for hours," Llobell said. "They and their families would live in a world of isolation."

The bill faced stiff opposition from insurance and business lobbyists who thought it would push costs up.

"How you can turn your back on a child in need? It's unacceptable, it's immoral," Llobell said. "What's the cost of not acting? What's the cost of not bringing this child out of the cocoon of autism?"

As for the Mainos, the family knew something was different with Robert, their older son, when he was 3 and in preschool. "We started getting calls saying he was very difficult to handle," his father, Ed Maino, said.

On the other hand, he could do simple division. "I would say, I have $20. He knew there were four people in the family, and he would say, 'That's $5 each,'" Ed Maino said. "We would give him math equations to do during church because he wouldn't sit still."

At first, he was diagnosed with attention deficit hyperactivity disorder. Then when he was in second grade, a doctor with the Children's Hospital of Richmond was the first to say Robert was "classic Asperger's," Ed Maino recalled.

"It was the first time what the doctor was telling us made sense," he said.

His parents paid for a series of treatments and therapies to help Robert learn how to behave and interact with others. Most of it wasn't covered by insurance. His mother worked from home to be his advocate, maintaining close contact with his school.

Those years weren't easy. Treatment included constant discipline, and Robert hated being different from his classmates. The family even went through counseling for a time. But all the work paid off.

When he was in fifth grade, he went to a summer camp designed specifically for children with autism. For the first time, he belonged.

"I think what he realized was there are other people like him," Ed Maino said.

After school, Robert works with kids at the Dominion School for Autism in Richmond. He's interested in a career in technology or special education, or perhaps a combination of the two.

It was "overwhelming" to testify before the General Assembly and meet the legislators, he said.

He's quick not to take credit for the bill, crediting instead Autism Speaks and the Virginia Autism Project.

"I'm the person who helps make the point stronger," Robert Maino said.

"He happened to be the right person at the right place at the right time," Ed Maino said. "We strongly believe that because of early intervention, Robbie is who he is…. He was on a course that would not have been productive. He's a brilliant kid with brilliant opportunities."

About autism

Autism spectrum disorders are a group of developmental disabilities that range from mild to severe. Symptoms include impaired social interaction and repetitive movements.

Roughly one in every 110 children is diagnosed with autism, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined, according to Autism Speaks, an advocacy group. That means there are potentially thousands of children in Virginia who have autism.

Government statistics suggest the prevalence rate of autism is increasing by 10 percent to 17 percent annually. It's more prevalent in boys than girls, and it's estimated that one out of 70 boys in the U.S. is diagnosed with autism.

The following is the letter Robert Maino sent to delegates after he watched them debate a proposed autism treatment bill. Maino, an upcoming Christopher Newport University freshman, was diagnosed with Asperger's Syndrome, which is a mild form of autism. The bill passed the General Assembly...

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